Edition of 16 May 2023

From 22-26 May 2023, the TREAT-NMD neuromuscular network will be holding a series of in-person masterclasses exploring diagnosis, patient and parent perspectives, standards of care and emerging therapies for different neuromuscular diseases. Three masterclasses will be held in total, on the topics of Duchenne Muscular Dystrophy, Gene Therapy, and Spinal Muscular Atrophy. The classes will each be 1.5 days long and are aimed at clinicians and other healthcare professionals and researchers working in the field of neuromuscular diseases.

From 21-23 June 2023, a workshop for youth aged 12-18 will be held in Barcelona, Spain in the framework of the EJP RD. The programme, designed for paediatric patients with an interest in health, biomedical research, and children's rights, aims to give participants the skills and knowledge needed to empower them to become active contributors to scientific research and healthcare service improvement.

There is no fee to participate, and selected participants will also have their travel and accommodation costs covered. The deadline to apply is May 31st, 2023. The workshop is organised by the TEDDY European Network of Excellence for Paediatric Research, in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation.

From 4-7 July 2023, the University of Zurich's ITINERARE program will be organising their 9th Rare Disease Summer School on the topic of "Innovative Therapies in Rare Diseases."

Participants will attend expert lectures, workshops, poster viewing sessions, and oral presentations, all with the goal of providing a comprehensive overview of the different aspects of rare disease care and research. The School is primarily aimed at clinicians, physician-scientists, postdocs, and PhD students. Travel grants are also available for some eligible participants.

From 25-29 September in Rome, Italy, the Istituto Superiore di Sanità and partners are organising a training course on rare disease registries and FAIRification of data, within the context of the EJP RD. The Summer School consists of two modules, which can be registered for separately: "Rare Disease Registries," from 25-27 September, and "FAIRification of data," from 28-29 September. Three fellowships are available for participants living in an EU-13 Country or in Turkey, with an additional three available for patient representatives. Applications must be submitted by 22 May, 2023.

From 29-30 September 2023, the European Society for Medical Oncology (ESMO) will be hosting a course on the prevention, diagnosis, treatment, and management of hereditary cancers. It is aimed at oncologists residing in Europe, but is open to all ESMO members. For successful applicants, there is no cost to apply and accommodation will be provided. A travel grant of up to 400 EUR is also available to help cover travel costs. Applications for the course will close on 27 June 2023. 

As part of the training activities proposed by the EJP RD, a course aimed at patient representatives titled "Training for patient representatives and advocates on leadership and communication skills" will be offered from 26-27 October 2023. Organised by Medical University of Gdańsk in collaboration with EURORDIS, the 2-day training and preparatory activities aims to teach participants presentation, negotiation and leadership skills through a range of activities.

The training will be free of charge for selected participants. There are also 21 fellowships available to help cover travel expenses up to 435€. The EJP RD is committed to ensuring that the training is accessible to patient representatives and advocates from all backgrounds, with those from Eastern Europe particularly encouraged to apply.

Applications for the training as well as the travel fellowship must be submitted before 26 April 2023.